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Living with a serious physical handicap in one of the world’s most industrialised nations – Italy – is hard enough for people with disabilities and family who care for them. But on top of that they’re afraid of what national health reform might do – which many in Italy say is long overdue. They could certainly do with more help. Luigi has amyotrophic lateral sclerosis. His wife attends to his needs. The system will not pay for nursing service at their home because his condition is not considered to be in an advanced stage yet.

Gina Brunori said: “Financially, this disease is disastrous: you end up losing everything you had. No matter what your occupation was, it’s over now”.

Luigi Brunori said: “More importantly, you feel like you are a burden. The moment you get the disease, you become a burden for everybody. That’s what you really feel.”

Today, Luigi has an appointment at the hospital. Gina is his loving porter. She borrowed a friend’s car to carry what they need. She has to do everything.

We go to where parents with disabled children are protesting in front of parliament. An average Italian family with a member who can’t manage on their own must spend around 7,000 euros per year to assist them. But the politicians have largely ignored this.

Protester Toni Nocchetti said: “We are here is because no one is talking about disabilities in this election campaign. We hear about football players, coalitions, hardship, past dictatorships, improbable scrapping of property tax… But we haven’t heard a single word by any candidate on disabilities, even though it concerns more than three million Italian citizens.”

Prime Minister Mario Monti fuelled a controversy when he said the future of universal health care in Italy is at risk. Public spending on this in 2011 was just over seven percent of GDP, which was lower than in France, Germany or Britain. But economic growth in Italy has been weak for many years, even before the debt crisis struck. And the system is three quarters publicly funded.

Economist Federico Spandonaro at CEIS University of Rome Tor Vergata said: “With the public debt we face today, we can’t assume that the system will continue providing services free of charge to all its citizens. We must find other ways to subsidise universal health care – which remains a great achievement – while we update the system.”

In Lazio, as in many other Italian regions, health care is the main weight on the public budget. The San Filippo Neri hospital is an excellent medical centre, especially for heart and neurosurgery. But these departments are both under threat of being shut down.

Cardiovascular chief Massimo Santini said: “What went missing is transparency. The real medical experts on the ground, who take care of the patients, who talk to them, who talk to their families, who know the real problems of the system, have not been asked for an opinion. As usual, a technical decision has been imposed on us, from the top down, by finance experts rather than healthcare experts.”

Cuts have been suspended until a new regional council is in place, but hospitals in Rome have been prevented from hiring. Doctors are working unpaid overtime. There is also the matter of the price list for medical therapies; it hasn’t been revised since 1997. This has created huge differences between Lazio and other regions.

Dr Maria Alessandra Mirri said: “In Lazio, radiosurgery treatment costs 600 euros, in Lombardy 9,000 euros. For every Lazio patient who decides to go to Lombardy for treatment, the region of Lazio has to pay the bill for 9,000 euros. The patient himself must pay all the travel expenses, while also enduring the trauma of travelling. The cost of all this moving around is huge!”

We asked why a patient from Lazio would go to Lombardy for his treatment.

“We have a waiting list here. We have the equipment, but not the people to run it. All of Lazio’s hospital equipment is being used at half capacity.”

It would be of great help to Italians like Luigi and Gina, who struggle with a severely debilitating disease, to have national political and practical attention paid to better coordination between medical care and social care.